Patient voices on PKU care: Insights from focus groups with current and former patients
Many adults with phenylketonuria (PKU) were discharged from clinics before lifelong treatment guidelines and new therapies. As part of the PKU lost to clinical care study, moderated focus groups were conducted to understand why individuals become lost to care and how to maintain patient engagement. Focus groups involved active clinic patients and those lost to PKU care. Discussions revealed desire for enhanced communication, improved support and access, and community connections.
Authors
- Suzanne Hollander (ORCID: https://orcid.org/0009-0002-6094-628X)
- Stephanie Sacharow (ORCID: https://orcid.org/0000-0001-5249-5840)
- Emily Zhu
Institutions
- Boston Children's Hospital (US)
- Harvard University (US)
Publication Details
- Journal
- Molecular Genetics and Metabolism Reports
- Published
- 2024-10-10
- DOI
- https://doi.org/10.1016/j.ymgmr.2024.101148
- Primary Topic
- Health Literacy and Information Accessibility
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Office of Dietary Supplements
- Rare Diseases Clinical Research Network
- National Institutes of Health
- National Institute of Neurological Disorders and Stroke
- National Institute of Child Health and Human Development
- National Center for Advancing Translational Sciences
- Eunice Kennedy Shriver National Institute of Child Health and Human Development